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Information and Resources for Families

We hope the following information will be of interest and benefit to anyone visiting our website, including families and children with special health care needs. Below you will find information about current events and topics of interest; this information is updated regularly.

Our Library Listings provide permanent access to a variety of resources, brochures and forms for families and children with special health needs.

Illinois Student Record Keeper for FamiliesOnline Community Services Directory
Patient assistance programs for free medicationISBE Parent Guide - Educational Rights and Responsibilities
Networking for Teens with Life-Threatening ConditionsQuestions and Answers About Health Insurance
Federal database of health coverage optionsSpecial Booklets for Parents of children with disabilities
New Financial Web Resource for ParentsGeneric Medication Discount Programs website
Illinois Medicaid ToolkitNew Medicare Guide
Federal Website Disability GovKaiser Foundation video on Affordable Care Act
Understanding PUNSFrequently Asked Questions
Family Advisory Council

 


 

Illinois Student Record Keeper for Families
ISBE has created the Illinois Student Records Keeper for Parents of Students Who Receive Special Education Services.

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Online Community Services Directory
The Maternal and Child Health (MCH) Library has released a new edition of the Community Services Locator, an online directory that can be used by service providers and families to find health, mental health, family support, parenting, child care, and other services in their communities. Topics include education and special needs, health and wellness, mental health and well-being, family support, parenting, child care and early childhood education, and financial support. It is available online at http://www.mchlibrary.info/KnowledgePaths/kp_community.html

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Patient assistance programs for free medication
Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need.

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ISBE Parent Guide - Educational Rights and Responsibilities
Parent Guide - Educational Rights and Responsibilities: Understanding Special Education in Illinois is a document, developed by the Illinois State Board of Education for parents and others to learn about the educational rights of children who have disabilities and receive special education services. (Updated 6/09)
Note: The following documents are in  .pdf format. In order to view them correctly please visit http://www.adobe.com to download version 9.0 of Adobe Reader.

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Networking for Teens with Life-Threatening Conditions
A new social networking website called Starbright World has been created for teens with chronic and life threatening medical conditions, and their siblings. The goal of the site is to help these teens connect with other youth like themselves who don’t have the same social opportunities.

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Questions and Answers About Health Insurance
There are many kinds of health insurance plans to choose from today.  This consumer guide, describes different kinds of health insurance plans, provides answers to common questions and contains web links to additional information.  There is also a glossary of terms, resources information and tips for working with your insurance in the back of the guide.

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Federal database of health coverage options
www.HealthCare.gov is “the first central database of health coverage options, combining information about public programs, from Medicare to the new Pre-Existing Conditions Insurance Plan, with information from more than 1,000 private insurance plans….The website will be a one-stop-shop for information about the implementation of the Affordable Care Act as well as other health care resources.  The website will connect consumers to quality rankings for local health care providers as well as preventive services.”  Price estimates for health insurance plans are available online. In the weeks and months ahead, new information on preventing disease and illness and improving the quality of health care for all Americans will also be posted.

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Special Booklets for Parents of children with disabilities
Four new booklets called Great Expectations, from the Illinois Department of Healthcare & Family Services, have been developed to help parents understand special issues of Community Involvement, Independence, Health & Wellness, Finance, Employment Skills and Self-Advocacy for their children.  The booklets are divided by age; Book 1- 0-3Book 2-Pre-school, Book 3- Grade School and Book 4- High School and Beyond.  The goal of the booklets is to help parents in raising a strong, independent, well-adjusted child who happens to have a disability. Note: all booklets are in PDF format.

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New Financial Web Resource for Parents
The web site Possibilities: A Financial Resources for parents of Children with Disabilities offers tips and information addressing many common financial issues and concerns of families raising children with disabilities from infancy to young adulthood. Topics include organizing financial records, managing money, preparing income taxes, health insurance options, dealing with debt, saving for college, preparing youth for adult employment, and more. Each section includes links to additional resources.

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Generic Medication Discount Programs website

Generic Medication Discount Programs from retail pharmacies provide effective, FDA approved medications for many medical conditions at affordable prices.

GenericMedList features medication discount programs that do not have complex
eligibility requirements, applications to fill out, or the long term commitment of Medicare Part D.

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Illinois Medicaid Toolkit
Illinois Medicaid Integrated Care Program Advocacy Toolkit - From The Arc of Illinois Family to Family Health Information Center.  This consumer guide can help families choose the health plan that may work best for you. The resources provided here will help you gather important information about your healthcare needs. It will also allow you to compare the two plans based on how they may meet your needs.

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New Medicare Guide
Guide explains how Medicare works with other kinds of insurance or coverage and who should pay your bills first. Some people with Medicare have other insurance or coverage that must pay before Medicare pays its share of your bill. 

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Federal Website Disability Gov

Disability.gov is federal government website that provides an interactive, community-driven information network of disability-related programs, services, laws and benefits. Through the site, Americans with disabilities, their families, Veterans, educators, employers and many others are connected to thousands of resources from federal, state and local government agencies, educational institutions and non-profit organizations. New resources are added daily across 10 main subject areas. Visitors can also follow daily tweets on Disability.gov’s Twitter  account, connect with other fans on Facebook and LinkedIn or read weekly guest blogs from experts on disability issues on Disability.Blog. Currenty topics include: Students with Visual and Learning Disabilities Thrive with Accessible Audiobooks from Learning Ally

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Kaiser Foundation video on Affordable Care Act

The Kaiser Family Foundation has written and produced Health Reform Hits Main Street, a humorous, animated, 9-minute video that provides a jargon-free explanation of the Affordable Care Act (ACA). Cokie Roberts, narrator, explains some of the problems the ACA set out to solve, such as the high cost of insurance premiums, the problems individuals with pre-existing conditions have obtaining health insurance, and lifetime benefit caps. This discussion is followed by an overview of the ACA provisions that have already been implemented to help resolve some of the problems, and the costs of implementation, which the Congressional Budget Office says will ultimately help control health care spending. You can also learn how health reform will affect access to health coverage for individuals, families, and businesses. Dr. Isabel Gomez-Bassols narrates the Spanish-language version of La Reforma Del Cuidado De La Salud Llega al Público

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Understanding PUNS
The Illinois Dept. of Human Services provides services and supports for individuals with developmental disabilities and their families that enhance opportunities for them to make real choices and receive life-spanning services to promote quality of life, individual progress and safety. PUNS (Prioritization of Urgency of Need for Services) is a statewide database of individuals with developmental disabilities who are in need of services; the state uses this data to select individuals for services as funding becomes available, to develop proposals and materials for budgeting and to plan for future needs.  Selection for assistance is based upon length of time on the database, urgency of need and geographic area of the state.  For more information go to the Dept. of Human Services' web site.

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Frequently Asked Questions
Here is a list of frequently asked questions (text-only version) about DSCC programs and services. Please feel free to contact us by using our Contact Us web page or sending us an email message should the information you need not be listed. Our e-mail address is: dscc@uic.edu .

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Family Advisory Council
DSCC established a Family Advisory Council in July 1999 which meets three times per year, (July, November & March), to provide onging and diverse family perspectives to the agency. Council members are reimbursed and are selected to represent the cultural, social and geographic diversity of the Illinois children with special health care needs receiving agency services. The Council is coordinated by a parent, Mr. Bob Cook, who serves as the agency's Family Liaison Specialist. He coordinates Council meetings and serves as a liaison for staff and families. More information about the Family Advisory Council (text-only version) is available on our website.

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Please use our Contact Us page if you have suggestions about resources you would like to see us include here, or if you have questions or comments about the information we have provided here.


 

 

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